![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 38. This is the beginning of the thread.
Posted by Elizabeth on March 9, 2002, at 2:25:20
Chronic pain sucks. (You probably knew that already.)
The reason I haven't been posting much lately is because my back-neck-shoulder pain has flared up again after having been dormant for quite some time. As a result, typing is something I can only do for a very short time. I've mostly limited myself to checking email, but I haven't even been very good about that. So if you posted something directed at me, or sent me an email and I haven't yet written back, you have my apologies -- I'm not just ignoring you! (I'm ignoring *everything*!)
I left a message with my mdoc's answering service, but I'm not sure how reliable he is about responding to those things. I also have an appointment with him, something like 10 days from now.
Anybody have any ideas for managing musculoskeletal pain? It goes away when I walk, but it comes back later. I've been doing those exercises I learned way back when, in physical therapy; they don't help any more now than they did then. Ibuprofen and ketoprofen, even very large amounts (e.g., 1200 mg ibuprofen; 150 mg ketoprofen), don't do a damned thing. (I have long since written off Tylenol as a placebo -- "like a sugar pill, only it doesn't even taste good.") Xanax seems to help some, but not reliably. I'm hoping my mdoc will be willing to prescribe Soma, which is what I was taking before and which seems to work pretty well. Opioids probably aren't an option, other than raising the dose of buprenorphine.
I'm sure a lot of you guys have similar conditions and know how unpleasant it can be. Any ideas?
TIA
-elizabeth
Posted by JohnX2 on March 9, 2002, at 2:49:09
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
pain's my game. :(let me have it...come on, what's it like? ugly details.
I saw a good suite of stretching excersizes
I stole off this guy's web site for tension headaches.
It works wonders for me for pains all over the back,neck,head
that don't respond to aspirin, etc. I wonder if
they are like your physical therapy excersizes?
I'll see if I can dig it up for you if you want.Your back,neck,shoulder muscles really get knotted
up typing in front of a computer,driving a car, etc.
I blame my work..they owe me.Klonopin, Topamax, Serzone. My medicinal pain killers.
Traditional pain killers never worked.
Never tried hardcore narcotics/opiods.-John
> Chronic pain sucks. (You probably knew that already.)
>
> The reason I haven't been posting much lately is because my back-neck-shoulder pain has flared up again after having been dormant for quite some time. As a result, typing is something I can only do for a very short time. I've mostly limited myself to checking email, but I haven't even been very good about that. So if you posted something directed at me, or sent me an email and I haven't yet written back, you have my apologies -- I'm not just ignoring you! (I'm ignoring *everything*!)
>
> I left a message with my mdoc's answering service, but I'm not sure how reliable he is about responding to those things. I also have an appointment with him, something like 10 days from now.
>
> Anybody have any ideas for managing musculoskeletal pain? It goes away when I walk, but it comes back later. I've been doing those exercises I learned way back when, in physical therapy; they don't help any more now than they did then. Ibuprofen and ketoprofen, even very large amounts (e.g., 1200 mg ibuprofen; 150 mg ketoprofen), don't do a damned thing. (I have long since written off Tylenol as a placebo -- "like a sugar pill, only it doesn't even taste good.") Xanax seems to help some, but not reliably. I'm hoping my mdoc will be willing to prescribe Soma, which is what I was taking before and which seems to work pretty well. Opioids probably aren't an option, other than raising the dose of buprenorphine.
>
> I'm sure a lot of you guys have similar conditions and know how unpleasant it can be. Any ideas?
>
> TIA
>
> -elizabeth
Posted by JohnX2 on March 9, 2002, at 3:19:48
In reply to Re: chronic pain -- it's baaaak » Elizabeth, posted by JohnX2 on March 9, 2002, at 2:49:09
Elizabeth,FYI,
I don't usually recommend non-pharmaceutical grade
products, but I was using this homeopathic elixer to
help me sleep while quitting klonopin and I found it had
some mild muscle relaxing properties.Further analysis of the ingredients I found this
hyoscyamus niger
-----------------
alkaloids (trace amounts):
scopolamine
hyoscyamine (an anti-spasmodic)
atropineand something called
ignatia amara. (dunno what this does).best non-pharmaceutical sleep aid i took.
http://www.dr-bob.org/babble/20020307/msgs/97021.html
-John
>
> pain's my game. :(
>
> let me have it...come on, what's it like? ugly details.
>
> I saw a good suite of stretching excersizes
> I stole off this guy's web site for tension headaches.
> It works wonders for me for pains all over the back,neck,head
> that don't respond to aspirin, etc. I wonder if
> they are like your physical therapy excersizes?
> I'll see if I can dig it up for you if you want.
>
> Your back,neck,shoulder muscles really get knotted
> up typing in front of a computer,driving a car, etc.
> I blame my work..they owe me.
>
> Klonopin, Topamax, Serzone. My medicinal pain killers.
> Traditional pain killers never worked.
> Never tried hardcore narcotics/opiods.
>
> -John
>
>
>
>
> > Chronic pain sucks. (You probably knew that already.)
> >
> > The reason I haven't been posting much lately is because my back-neck-shoulder pain has flared up again after having been dormant for quite some time. As a result, typing is something I can only do for a very short time. I've mostly limited myself to checking email, but I haven't even been very good about that. So if you posted something directed at me, or sent me an email and I haven't yet written back, you have my apologies -- I'm not just ignoring you! (I'm ignoring *everything*!)
> >
> > I left a message with my mdoc's answering service, but I'm not sure how reliable he is about responding to those things. I also have an appointment with him, something like 10 days from now.
> >
> > Anybody have any ideas for managing musculoskeletal pain? It goes away when I walk, but it comes back later. I've been doing those exercises I learned way back when, in physical therapy; they don't help any more now than they did then. Ibuprofen and ketoprofen, even very large amounts (e.g., 1200 mg ibuprofen; 150 mg ketoprofen), don't do a damned thing. (I have long since written off Tylenol as a placebo -- "like a sugar pill, only it doesn't even taste good.") Xanax seems to help some, but not reliably. I'm hoping my mdoc will be willing to prescribe Soma, which is what I was taking before and which seems to work pretty well. Opioids probably aren't an option, other than raising the dose of buprenorphine.
> >
> > I'm sure a lot of you guys have similar conditions and know how unpleasant it can be. Any ideas?
> >
> > TIA
> >
> > -elizabeth
Posted by IsoM on March 9, 2002, at 3:32:41
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Elizabeth, I don't know the cause of your pain in your shoulders/back/neck but it's that the area that troubles me the worse. Inactivity (even relative inactivity which would be considered by others as not inactive) will make it flare up again. I need to stay active on a daily basis. One of the reasons I gave up trying to get a degree - the pain became unmanagable & badly affected my sleep & concentration.
Ibuprofen & acetaminophen do nothing for me. Codeine helps but after a few days won't work. I've got a new prescription for an NSAID called Vioxx - I'm sure you've heard of it. It's not bad but still not quite enough. Muscle relaxants will help some too - not OTC, but prescription strength ones.
I've developed my own Tai Chi type exercises for stretching & limbering up the muscles in these areas. One is similar to the way an archer would pull an arrow back from his bow done in slow motion slowly stretching all the muscles there. What you can do is imagine movements from different animals or whatever & enact those motions. Another is to imagine you're slowly flapping your wings like a heron does before taking off in flight. Always keep movement very fluid not sharp or jerky.
I also love music - classical & Celtic mainly but many other types too. I can't hold still when I hear music & will dance & sway to it. You might enjoy putting music on & with your eyes half-closed, move your upper body - arms, hands, head, shoulders & waist to the music. I half-close my eyes as I imagine, along with the music, that I'm all sorts of diff dancers from diff cultures & times. It's fun & very therapeutical.
Lastly, my best friends are two hot water bottles that I make liberal use of around my shoulders & neck (like I'm going to do so tonight). The warmth is long-lasting from hot water & will loosen up tense muscles. For me, cold compresses wwould only make my muscles spasm.
Posted by beardedlady on March 9, 2002, at 6:33:04
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
I have this neat little electric shiatsu massager for my upper areas. I'm at the computer all day, and it helps. I found out the cause of much of this (deep sleep in awkward positions from the Serzone exacerbates it, but doesn't cause it for me) was my chair, so I got a new one. I'm much better, but I still have flares. Right now, I am in tons of shoulder and upper back pain. (I also have TMJ.) Is yours from your meds, from your jaw (TMJ), from fibromyalgia?
The best advice I can give is the advice I know works, but it's a great expense: massage. My mother was in a car accident and had headaches for ten years. She started getting a weekly massage and continued for a few months. She hasn't had a headache for two years (and she hadn't been massaged more than 4 times last year!) I too benefit from it (my best friend's a massage therapist, so I get a little discount). Anyway, that little machine works--set it against your chair or sofa, and lean back. It's almost like a person. These little balls dig into your muscles. It's at Brookstone, Shiatsu Massager, I think.
Good luck. Pain sucks.
beardy : )>
Posted by NikkiT2 on March 9, 2002, at 8:06:56
In reply to Re: chronic pain -- it's baaaak » Elizabeth, posted by beardedlady on March 9, 2002, at 6:33:04
have you ever seen a chiropractor Elizabeth??
I have lucky only suffered from back pain a couple of times, but each time it was sorted out very quickly by the chiro[ractor. I also used to see one for severe arm pain (I ahve carpul Tunnel, Tenosynavitis and Tenodonitis in right arm!!) and the feeling of looseness and wonderfulness I get afterwards is great.
Hope you find some answer..
Nikki
Posted by colin wallace on March 9, 2002, at 10:03:09
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Hi Elizabeth,
Thought I'd chime in here with a sympathetic note on chronic pain;I've suffered with it since adolescence, throughout my entire body, but especially on the upper back, neck/scapular areas.My condition has been ascribed to (at times) all those vague neuro/muscular/skeletal conditions- M.E, fibromyalgia, and plain old depression.Chicken and egg syndrome, although my personal belief is that the ?myalgia caused my depression, and not the other way around.
Anyhow,I've tried everything from anti-inflammatories, high dose antidepressant regimens
,stretching and exercise etc. with little impact.
Recently, when I hit upon Sam-e for my depression
(primarily),I noticed a great (and I really do mean great, not 'imagined')decrease in joint and muscle pain, and overall muscle stiffness.The improvement in my depression took a little more time, but that was significant too.I wouldn't presume to grasp how this works exactly (especially as nobody seems to really know).I could churn out some second hand thesis, but I won't, I'll just say that it really has all but eliminated my aches/pains.
If I could only tolerate a high enough dose, I could prehaps eliminate the 'all but' aswell!
Getting pins stuck your ears/neck (hellraiser?!)is quite good fun and relaxing if nothing else.
Wishing you luck,Col.
Posted by IsoM on March 9, 2002, at 14:55:56
In reply to Re: chronic pain -- it's baaaakElizabeth, posted by colin wallace on March 9, 2002, at 10:03:09
For anyone who reads this, but mainly Elizabeth.
I read about studies done on acupuncture that one of the main reasons it relieves pain is from the release of endorphins & enkephalins. Those who have taken opiate-type drugs previously for pain haven't benefited as well from acupuncture as a control group. By reliance on external opiates, the body becomes less able to produce it's own natural painkillers.
I found this to be true in my case. Years ago before I needed to use codeine, acupuncture worked very well for pain control in me. But if I've had to use codeine too often, acupuncture has had no effect on pain relief.
Thought I'd throw this in, in case anyone was interested.
Posted by trouble on March 9, 2002, at 15:42:15
In reply to Re: chronic pain and Acupuncture, posted by IsoM on March 9, 2002, at 14:55:56
Hi,
My two cents:
I have moderate/severe carpal tunnel syndtome, sometimes to thepoint of paralysis. The ONLY treatment that helps in acupuncture, and the needles hurt like the dickens, but afterwards the pain is completely gone until I overuse my hands again and get another flare-up. It's incredible relief. My insurance, however won't pay for it, but will pay for Western medical approaches, if that means 2 worthless office visits a week, cortisone treaments, and eventual surgery that's fine w/ them. Go figure.trouble
Posted by NikkiT2 on March 9, 2002, at 16:36:36
In reply to Re: chronic pain and Acupuncture, posted by trouble on March 9, 2002, at 15:42:15
Same here.. acupuncture was a god send for my carpul tunnel... and mental stuff too!
just a shame I can't afford it anymore :o(
Are you going to have an op on your CT?? I was on the waiting list, then moved to London.. haven;t put myself back on it as I was told they won't do it undr general aneasthetic, only local, and I have a very severe phobia of local aneasthetics so am too afraid to go ask again!!!
Anything else you find helps it?? Its playing up terribly at the moment and I hate being a one hand typist... also would be nice to actually be able to write again after 4 years of not being able to!!!
Nikki
Posted by Elizabeth on March 9, 2002, at 16:52:19
In reply to Re: chronic pain and Acupuncture, posted by trouble on March 9, 2002, at 15:42:15
Hi everyone. Thanks for all the responses. You guys are great.
I still haven't heard from my mdoc, and I'm going out of town for a few days so I probably won't get to talk to him until I see him.
I went to a pain clinic when I was living in Boston. The pain doctor diagnosed me with thoracic [T8-T9-T10] facet syndrome. The pain is caused by inflammation in just a couple of the joints between my lower thoracic vertabrae -- it's amazing how widespread it is (it typically goes from my neck down to my waist).
When they identified the source of the pain, I had steroid injections in those two joints. This eliminated the pain entirely for a week (this is what convinced me that the diagnosis wasn't entirely bogus). That's not something that I can do regularly, though (my understanding is that it was done for diagnostic purposes), and I'm scared of the potential mood effects of systemic steroids.
The pain is on only one side at a time (usually), but it isn't always the same side. (Was that clear?) I don't know what to make of this. It's this harsh stabbing sort of pain.
I've been relatively active lately. I try not to sit at the computer for too long at a time. The pain subsides some when I'm standing/walking/running, but then it comes right back when I sit down again. I was quite active when I had the really bad flare-up that made me decide to go to the pain clinic, so I don't think that activity is sufficient to relieve it.
Nardil seems to have helped. I didn't notice this the first time I took it, but when I stopped, the pain returned almost immediately. Then I went back on Nardil and the pain went away, then I stopped taking it again and the pain came back. It does have a relapsing/remitting course, but I'm pretty sure that the Nardil was doing something for me. Unfortunately, Effexor doesn't have that magic.
I saw a massage therapist (a legit one, not -- well, you know) for a little while. It was nice, but there weren't any long-term benefits and it was too expensive.
John: do you remember anything about the stretching exercises that you mentioned? Like, what's an example of one? I wonder if all those anticholinergics had something to do with why that "homeopathic" stuff helped you sleep?
IsoM: I think that sleep problems are to blame for much (or all) of my difficulty concentrating. I manage to get enough sleep, but it's fragmented, not continuous. I think the music idea is a good one. I need to set up my stereo (it's packed in a box somewhere right now). You also mentioned fantasizing about being in different places/times/cultures; that's something that I used to do when I was younger (it was a form of escapism, I guess :-) ). Soma, which I mentioned, is a prescription muscle relaxant. There are a lot of things that are marketed as muscle relaxants that are really just antihistamines/anticholinergics. (Some of them are similar to tricyclic ADs.) Hot water bottles might not be so great -- I'm always too hot as it is! But showering seems to help some. (Of course, that might just be due to standing rather than sitting.) I did try acupuncture at one point, but it was expensive an ineffective. Some doctors who've seen the effect that opioids have on me when I'm depressed think that my depression is due to a dysfunction of the endogenous opioid system. If they're right, maybe that's why acupuncture didn't help me.
beardedlady: I once met a guy who knew some Shiatsu techniques. He tried them on me, and while it didn't have enduring effects (we only met once), it was pretty cool while it lasted. I don't have any of the conditions you mentioned; I have what's sometimes called myofascial pain. When you say you have TMJ do you mean that you have pain originating in that joint? That would be a type of myofascial pain also, I think. My mother has a friend who's a massage therapist; maybe I should go see her.
Nikki: I've never been to a chiropractor, and I don't have the money to see one now. I'll keep that in mind. One concern I would have is how to tell a good chiropractor from a bad one. Also -- may I ask why you're afraid of local anaesthetics? Is it just that you don't want to be conscious while anaesthetized, or is there something more, or don't you know?
Col: I get the "maybe it's psychosomatic" thing a lot. Some doctors hear that I've been depressed and just assume the pain is related to that. I don't see a relationship, though. Certainly not a temporal one; I've been depressed without pain a number of times, and vice versa. Nardil is the only antidepressant that ever helped with it (now on Effexor 375 mg/day). I've never tried SamE. Is it safe to take with Effexor, and if so, do you know of a brand that is reliable? I did see an acupuncturist for a while, but it wasn't helping after a certain number of sessions (I forget what number, but someone I trust recommended that I give it that long) so I quit.
Thanks for listening, and thanks for all your ideas and suggestions. I wish all of you the best, but especially those of you who are in pain too.
-elizabeth
Posted by beardedlady on March 9, 2002, at 19:50:31
In reply to Re: chronic pain, posted by Elizabeth on March 9, 2002, at 16:52:19
Elizabeth:
In order for massage to work, you have to go regularly. One time is pleasureful but not permanent. Your tissues and muscle fibers have to consistantly be put in a comfortable position in order for them to remember that position. It's the same with chiropractors, only they move the bone. (Problem is, bone can't stay put unless the tissues surrounding them are moved.) Accupuncture has short-term benefits too. All the relief is maintenance, sort of like the pill. Keep taking it, and the pain is gone.
TMJ is the tempero-mandibular (sp?) joint--your jaw. It causes horrible pain in the neck, shoulders, head, etc. Yes, it's myofascial too. I get myofascial massages--they are the best relief for me--that muscle stretching feels sooooo good and lasts for a few days.
Anyway, you already have a diagnosis, so it's probably not TMJ, but if any of your meds (or just your stress) cause you to grind your teeth, you could have that too. Did the folks at the pain clinic tell you what would relieve your pain, or did they just diagnose you?
beardy : )>
Posted by IsoM on March 9, 2002, at 20:07:27
In reply to Re: chronic pain, posted by Elizabeth on March 9, 2002, at 16:52:19
Elizabeth, massage is great for most people. It didn't work for me, even done regularly. The therapist (& there were many) said that by the time I got home, my muscles had probably cramped up again. Muscles have a 'memory' & return to their old positions quickly.
I, too, am always warm. Last night it was snowing & windy (hey, we're supposed to be Canada's 'banana belt'!) but when I left work, I walked out in a sleeveless shirt as I'd bought a beautiful indoor azalea & didn't want it getting cold-shock so I wrapped it in my jacket. I could recover from the cold but not the plant. But even brushing the snow off the car & driving home before it had warmed up, I wasn't cold.
But the sore spots on my body are colder than the rest. When I apply heat there, it doesn't feel too hot but if I apply heat to other spots, it would. I also open my window & cool the room down considerably. To be honest, my hot water bottle therapy doesn't work so well in summer as it's much too hot to use then. But for me, only heat will cause my muscles to properly relax. You don't need to make it hot just comfortly warm for yourself.
I remember you telling me about the Soma now. Well, that idea's out the door. Ask about Vioxx when your doc returns, if you'd like. The Tai Chi type exercises are also stretching exercises but very gentle. I do hope you find something soon. Pain is a mean bitch.
Posted by shelliR on March 10, 2002, at 9:55:11
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Posted by Annie Z. on March 10, 2002, at 14:14:50
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Elizabeth,
Before I found relief, I suffered from myofascial pain in my wrists, my forearms and upper arms for about a year (and intermittently before my year-long struggle). I went to a Rheumatologist, tried physical therapy, and tried to take strong NSAIDs. Everything worked somewhat, but I was still very disabled. Cleaning, typing and even rolling the grocery cart around in the store, all hurt.
Finally, I tried SAMe (S-adenosylmethionine). After about three days on two, 200-mg pills, my pain was almost completely gone. Shortly thereafter, my pain disappeared completely, and I never had pain in my arms again -- that is, until I stopped taking the SAMe. I tried to stop SAMe, and my pain returned, as painful and annoying as it was before. (By the way, after I started the True Hope supplement (about 28 pills/day), I no longer needed to take the SAMe, but this is another story.)
SAMe has been shown in several published studies to be specifically effective as a therapy to reduce the chronic pain associated with fibromyalgia. Please see the journal article that follows.
Unfortunately, as you probably know, SAMe is very expensive. Also, a lot of the companies that make SAMe do not put the labeled dose in their product. In fact, you are a lot more likely to be ripped off in buying SAMe than in most other supplements. For this reason, to get a reliable source of SAMe is imperative. I bought my SAMe from the “Life Extension Foundation, (LEF),” because I believe they are very professional and, I think, a non-profit foundation. They have an independent lab, which evaluates all of their products.
As far as the price, you can buy 200 200-mg pills from LEF for about $43. 400 to 800 mg of SAMe is the is the dose for SAMe that LEF suggests. That will run you about one dollar to two dollars per day. I only needed to take 400 mg of SAMe.
I hope you try this strategy, because I think our diagnoses are similar; and this may very well help you.
Annie Z.
Evaluation of S-adenosylmethionine in primary fibromyalgia. A double-blind crossover study
Tavoni A, Vitali C, Bombardieri S, Pasero G
Institute of Medical Pathology I, University of Pisa, Italy.
Am J Med 1987 Nov 20;83(5A):107-10
The effect of S-adenosylmethionine (SAMe) and placebo was evaluated in a short-term crossover study of 17 patients with primary fibromyalgia. Eleven of 17 patients had a significant depressive state as assessed by either the Hamilton Depression Rating Scale or the Scala di Autovalutazione per la Depressione (SAD) rating scale. The number of trigger points plus painful anatomic sites decreased after administration of SAMe (p < 0.02) but not after placebo treatment. In addition, scores on both the Hamilton and SAD rating scales improved after SAMe administration (p < 0.05 and p < 0.005, respectively), whereas they did not significantly change after placebo treatment. In all the patients, there was a good correlation between scores on the Hamilton rating scale and the number of trigger points. Thus, this preliminary study confirms the close relationship between primary fibromyalgia and psychologic disturbances, particularly with regards to a depressive state. SAMe treatment, by improving the depressive state and reducing the number of trigger points, seems to be an effective and safe therapy in the management of primary fibromyalgia.
Posted by BarbaraCat on March 10, 2002, at 17:12:24
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Yo Elizabeth,
Wecome back! Wondered where you were and if you were OK. I'm glad it's 'only' physical rather than emotional pain (although I'm only too aware of how one can cause the other). I haven't tried prolotherapy, but a few friends have and have reported great results. It may be paid for by insurance. The website is www.prolotherapy.com.If you can find a warm water pool, hydrotherapy exercises can help alot. Also, regular stretching done in a hot tub. I have a bad case of fibromyalgia and agree wholeheartedly with IsoM. Movements to keep limber are essential and flowing dance seems to help me out the most. Of course, I say this as I'm getting ready to crawl back into bed at 3:00 pm. Hey, it's a rainy Sunday, I hurt, and I just don't wanna!! I'll keep you in my thoughts. - Barbara
Posted by Triss on March 10, 2002, at 20:04:34
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
>[...]
> The reason I haven't been posting much lately is because my back-neck-shoulder pain has flared up again after having been dormant for quite some time. As a result, typing is something I can only do for a very short time. I've mostly limited myself to checking email, but I haven't even been very good about that. So if you posted something directed at me, or sent me an email and I haven't yet written back, you have my apologies -- I'm not just ignoring you! (I'm ignoring *everything*!)
>[...]Hope your chronic pain problem gets better soon (so you can resume posting 'fully' again... <g>). I've personally found you're contributions to this forum to be quite valuable, as they are, both, objectively informed as well as very helpful on the subjective/personal level (a rare combination). But, my appreciation of your messages aside, and of course more important to be sure, take care of yourself.
Take care,
Triss
Posted by shelliR on March 11, 2002, at 19:12:42
In reply to chronic pain -- it's baaaak, posted by Elizabeth on March 9, 2002, at 2:25:20
Hi Elizabeth,
I hope you are still checking in even though it is hard to write.
My father just called me to tell me he was sending me an article about pain from some MS association that he donates money to. He said it was not directly related to pain and MS, but all pain.
Both my parents were dead set again me taking bupe or any opiate again, although I told them I couldn't stand to live with my pain. Anyway, my dad must have let his mind open a little to send me this article because it talks about how the director of a pain center at NIH (I think a Dr. Berger) is of the opinion that a person should not suffer chonic pain, even if it means they take opiates. But she also says that the person must work with a person or clinic that understands the use of opiates; even oxycontin is not "bad" if it is used properly.
So I was just wondering about the pain you are suffering, and whether something for pain would help you. I know it is best to use other alternatives first, but maybe increasing the buprenorphine might help your pain.
Even though I am able to get bupe via the internet, I miss the support of a doctor. I am finally realizing from the advice and Judy and others that I might be better off going the pain route instead of the pdoc route. I realize that your situation is different, but I hope you explore *everything* that might give you relief for your pain.
Take care,
Shelli
Posted by BarbaraCat on March 11, 2002, at 23:26:27
In reply to Re: chronic pain -- it's baaaak » Elizabeth, posted by shelliR on March 11, 2002, at 19:12:42
Shelli,
If the article has an internet URL, I'd be interested in getting it. I have fibromyalgia which is sometimes very severe. It's concomittant with the depression, and sometimes one outweighs the other, however, I don't feel my pain is being addressed sufficiently by my primary care doc. Also, you mentioned you're able to get bupe from the internet. I know the policy on this site regarding posting overseas drug url's, however, maybe posting the country won't be such a no-no. I could do some research on my own, try it, and then report back to my doc if it's a winner. I take hydrocodone when the pain gets bad. Is bupe all that much different from hydro? Another question: does it cause constipation? That aspect of the hydro is literally a pain in the a**.- Barbara
Posted by shelliR on March 15, 2002, at 21:59:23
In reply to Chronic Pain » shelliR, posted by BarbaraCat on March 11, 2002, at 23:26:27
Hi Barbara,
To attempt to answer your questions:
Buprenorphine is a partial opiate, but it does not feel all that different to me than hydrocodone. I assume there must be a major difference since they are close to approving bupe as appropriate for detox (and not hydro).
Bupe is also constipating. But as I told Elizabeth in another post, putting 1/4 a day of ground flax in yogurt completely takes care of that problem for me. If you try it, buy a little electric coffee grinder (about $10), and grind it just before you eat it.
My father sent me the article on pain. I don't see a URL, but they give two useful URLs on pain which I found very helpful:
www.ampainsoc.org
www.aapainmanage.org
Anyway, I’m going to start a post below on pain and opiates/habituation vs addiction below.
The person they interview is Dr. Ann Berger, chief of pain and palliative care services at the Clinc Center at NIH.Take care,
Shelli
Posted by cisco on March 21, 2002, at 15:11:49
In reply to Re: chronic pain, posted by Elizabeth on March 9, 2002, at 16:52:19
Hey Liz Beth:
Have U tried increasing the Buppy Morphine?
Disregarding cost for a moment, Can palliation be achieved with a substantial (2x, 4x or more) dose increase? You are currently taking 300ug, 3x times a day? That is a fairly low dose, IMHO.Hope you feel bettah!
Posted by Elizabeth on March 22, 2002, at 18:33:00
In reply to Re: chronic pain - More Bup?, posted by cisco on March 21, 2002, at 15:11:49
> Hey Liz Beth:
I'm neither a "Liz" nor a "Beth," much less both! :-)
> Have U tried increasing the Buppy Morphine?
Does "buppy" rhyme with "puppy?"
Seriously -- there's supposed to be a ceiling effect with buprenorphine (as it is a partial agonist), but nobody seems to know where the ceiling is in humans. But using opioids for chronic pain can be tricky. I'd prefer not to go down that road; I think that my pain could be managed with muscle relaxants (Soma, benzos).
My mdoc has me taking a NSAID (diclofenac, brand name Voltaren) thrice daily, as opposed to just "as-needed." He says that it may work better if used regularly, so I thought it'd be worth a try. I ran out of Xanax because I was using it for the muscle tension. I should have asked him (my mdoc, that is) for a new script when I saw him, but it didn't occur to me, and now I'm just out and I can't reach my pdoc (my next appt with her isn't until 4/16).
> Disregarding cost for a moment, Can palliation be achieved with a substantial (2x, 4x or more) dose increase? You are currently taking 300ug, 3x times a day? That is a fairly low dose, IMHO.
It's a reasonable amount; 0.3 mg of buprenorphine is supposed to be equivalent to 10 mg morphine (the equivalent PO dose would be about 30 mg, I think). The maximum recommended amount of buprenorphine to be given in any single dose is 0.6 mg, and it's recommended that this dose only be used occasionally, not regularly. (Addicts need much higher doses for maintenance, of course, but that's a very different situation.)
-elizabeth
Posted by shelliR on March 22, 2002, at 19:21:12
In reply to Re: buprenorphine for chronic pain? » cisco, posted by Elizabeth on March 22, 2002, at 18:33:00
It's a reasonable amount; 0.3 mg of buprenorphine is supposed to be equivalent to 10 mg morphine (the equivalent PO dose would be about 30 mg, I think). The maximum recommended amount of buprenorphine to be given in any single dose is 0.6 mg, and it's recommended that this dose only be used occasionally, not regularly. (Addicts need much higher doses for maintenance, of course, but that's a very different situation.)
-elizabeth
Elizabeth,
We have determined on the board that I am not an addict. Yet I have been taking .8mg regularly at one time, then usually about .6 mg later (but I also have bad chest pain mixed in with depression). Also I am taking it sublingually but from what I've read it doesn't make a difference; just takes longer to reach peak dose. I was taking a very high dose of oxycontin then methadone. I think that has affected my reaction to buprenorphine; I also need more vicodin than before. Before oxycontin, the most vicodin I ever took in a day was 7.5mg-never went up in three years. So I think for all intensive purposes I REACT like an addict. Because if heroin didn't change your brain chemistry, I think when addicts switch to bupe as an alternative, they would be able to taper very quickly. I got off of methodone (besides my nightmare hospital experience) quite easily, within a couple a week by decreasing 10mg per day I think. BTW, in Botkin's study, some of the subjects (patients) got up to 3mg a day and he still counted that as a success. So where are you getting the expected maximun dose?Shelli
Posted by cisco on March 22, 2002, at 19:44:45
In reply to Re: buprenorphine for chronic pain? » cisco, posted by Elizabeth on March 22, 2002, at 18:33:00
Dear Elizabeth:
I apologise for playing with your name. No offense intended.
I suppose Buppy is closer to Poopy than Puppy.
Playing with language is an annoying habit of mine.The range of Buprenorphine dosing is so wide - 32mg down to 200ug, seems like there ought to be a little wiggle room in there.
I agree: where is the ceiling? Might be a big house....
Also, if Kappa agonism is dysphoric, what is the effect of Bup's potent Kappa antagonism?
The NSAIDS create an interesting nociceptive synergy with opioids in the brain. Hope they help you.
I was offering my $0.02 out of concern for your pain, and my interest in this unique Opioid. Nothing more, nothing less.
Take care,
Cisco
Posted by cisco on March 22, 2002, at 20:06:51
In reply to Re: buprenorphine for chronic pain? » Elizabeth, posted by shelliR on March 22, 2002, at 19:21:12
Dear shelliR:
I am currently taking 0.4mg of Buprenorphine, about 5x a day. However, instead of taking the tabs sublingually, as indicated, I am instead crushing them, and insufflating (snorting) the resultant fine powder. LOL!
Amazingly, the Bup works almost immediately, and IMHO, it is considerably stronger than when taken sublingually.
Perhaps it's because the nasal mucosa is closer to the brain, or there is more complete absorption, and no waste.
Yes, it looks suspicious snorting lines of white powder. LMAO! However, since I discovered the 'virtue' of snorting Bup, I have yet to waste another dose via the SL route!
My research continues....
Cisco
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